Hi all - just diagnosed

[steph_irish]

Hi all,
Just been diagnosed with crohn's via colonoscopy.
I had a recent bout of campylobacter followed by extreme cellulitis on both legs, which seems to have brought all underlying problems to the surface.

I have been feeling miserable on and off for a while now and had researched my symptoms... I've been convinced for the last 6 months I had crohn's, after many disappointing visits to my GP, I took the initiative to change as I simply wasn't been taken seriously. (I didn't lose any weight in fact I gained a little, and with makeup I looked ok)

I had a lot of rectal bleeding quite heavy at times,
----NOW I'M NO GP :ylol: BUT EVEN AN IDIOT WOULD BOOK FURTHER TESTS.

Anyway my new GP was wonderful and really listened and of course booked the relevant tests.
1. stool stample to check for infection (showed inflammation)
2. a blood test with FBC which showed anemia and it just went from there.

Don't feel that anyone but you guys can understand how I'm feeling right now,
I feel my partner is insensitive and fighting with me a lot, he's obviously frustrated and can't handle it, which is of no use to me.

I NEED CUDDLES NOT ANGER, TRUST ME I DIDN'T ASK FOR THIS.

The ulceration was pretty bad according to consultant so have started meds which please god will work, sick of this place oo:

I hope to hear from you guys

 

[Axelfl3333]

Welcome to the club no one wants to join.tons of info on here be wary of doctor google,take note of your diet oily,greasy,raw veggies,salad stuff can be bad.I found buscopan helped with abdominal pain I was and am on other medication and still am,so he wasn't,t totally out of the ball park.it does get better.good luck

 

[steph_irish]

Cheers for the welcome will definitely watch the diet, as for the Buscopan (OOPS ) my mistake, he was still an idiot though
yeah found 2 many freaked out stories on google, just taking it day by day. Are you in remission now?

 

[Axelfl3333]

I am sort of ,prone to the odd bad day, unsure why,I tend to feel that the occasional bad day is just the way it is.recent blood tests were really good.i had been in pain for 2 years that's gone away it's just an annoying condition that seems to take a long time to control and settle.
You can help it along being careful with your diet learn your trigger foods and avoid,a common theme that helps is exercise it's made a big difference for me and is a common thread on the forum.
Patience with your meds and being regimented about taking them at regular times is a good habit to get into.
Above all remember it does get better.good luck

 

[VeganOstomy]

I'm sorry for your diagnosis, but more so for your unsupportive partner - I can tell you that I know how that feels and the online support community will become invaluable to your life with Crohn's.

Wishing you the best of luck and a speedy remission!

 

[ZestforZen]

Good luck, I'm with you in the newly diagnosed club, 6 weeks ago for me. What symptoms led to your diagnosis? I hope you do well now that you are diagnosed and can start treatment. It's a shame you aren't getting the support you would like, hopefully this improves and you can also find some help here and elsewhere. Best wishes for a speedy return to feeling well again!
ZestforZen

 

[PVail]

Hi Steph . Im really glad you got a diagnosis in that I know how extremly frustrating this is battling with GPs. Four years it took me to get diagnosed and eventualy im managing much better witth the aid of medication. I hope now you will get the correct medication to ease your symptoms. All I can say is dont back off and keep your doc up to date, cause if you aint calling they aint looking either.
Now that you have this youve got to take steps your self to monitor everything you eat , what works ,what doesnt , how to get the most out of other diets when your system is not good.
Its important to be in control I think so you can almost predict how your day will go ,then you can plan things much better .
Personally I find keeping fit either through yoga or in my case cycling has had a big effect on how I tolerate the bad times. It makes me feel more energised and gives an excuse to go out even just for a walk.
Partners well they dont understand, how could they ,all they know is there life has also changed and some if not all find that hard to deal with. Much patients is required which is not easy when you are feeling crap.
Its so important to try and stay positive , get out and about and above all try to stay calm and in control. I have had some pretty embarrassing moments at work and in town but now I carry spare underwear and
that everywhere. I m prepared so im not that bothered lol .
Just take care of yourself and be positive .

Peter

 

[steph_irish]

I am sort of ,prone to the odd bad day, unsure why,I tend to feel that the occasional bad day is just the way it is.recent blood tests were really good.i had been in pain for 2 years that's gone away it's just an annoying condition that seems to take a long time to control and settle.
You can help it along being careful with your diet learn your trigger foods and avoid,a common theme that helps is exercise it's made a big difference for me and is a common thread on the forum.
Patience with your meds and being regimented about taking them at regular times is a good habit to get into.
Above all remember it does get better.good luck

Thanks for the advice, and I'm glad to hear there is some light at the end of the tunnel. I've already taken steps to improve my diet and hope once I feel a little better to join a gym and take up swimming etc. Thankfully I stopped smoking a year ago cause I heard that aggravates symptoms

 

[steph_irish]

I'm sorry for your diagnosis, but more so for your unsupportive partner - I can tell you that I know how that feels and the online support community will become invaluable to your life with Crohn's.

Wishing you the best of luck and a speedy remission!

Hi there, thank you so much for your response, and I'm sorry that you also lack much needed support. I will definitely visit your blog. xx

 

[steph_irish]

Good luck, I'm with you in the newly diagnosed club, 6 weeks ago for me. What symptoms led to your diagnosis? I hope you do well now that you are diagnosed and can start treatment. It's a shame you aren't getting the support you would like, hopefully this improves and you can also find some help here and elsewhere. Best wishes for a speedy return to feeling well again!
ZestforZen

Hi fellow newbie
I have been feeling unwell on and off for quite some time, I work at an airport so I put a lot of my recurring tummy bugs down to interacting with too many people. Felt like being back at school...you know the one where your doubled over with pain. Then I got campybylobacter infection last June, again I think interacting with passangers, followed by severe cellulitis on both legs. (Soooo painful) and it just went from there. Thankfully I changed my Doctor as initial one was useless. New Doc is worth her weight in Gold! How about you?

 

[steph_irish]

Hi Steph . Im really glad you got a diagnosis in that I know how extremly frustrating this is battling with GPs. Four years it took me to get diagnosed and eventualy im managing much better witth the aid of medication. I hope now you will get the correct medication to ease your symptoms. All I can say is dont back off and keep your doc up to date, cause if you aint calling they aint looking either.
Now that you have this youve got to take steps your self to monitor everything you eat , what works ,what doesnt , how to get the most out of other diets when your system is not good.
Its important to be in control I think so you can almost predict how your day will go ,then you can plan things much better .
Personally I find keeping fit either through yoga or in my case cycling has had a big effect on how I tolerate the bad times. It makes me feel more energised and gives an excuse to go out even just for a walk.
Partners well they dont understand, how could they ,all they know is there life has also changed and some if not all find that hard to deal with. Much patients is required which is not easy when you are feeling crap.
Its so important to try and stay positive , get out and about and above all try to stay calm and in control. I have had some pretty embarrassing moments at work and in town but now I carry spare underwear and
that everywhere. I m prepared so im not that bothered lol .
Just take care of yourself and be positive .

Peter

Thank you for that, THE POWER OF POSITIVE THINKING, I like the idea of yoga, that will be something to look forward to.
I'm just thinking bout the idea of bringing spare underwear to work I work in an airport and am subject to have my bag searched on a random basis,...:ylol: kinky..(not) cheers for the support :ghug:

 

[ZestforZen]

Hi fellow newbie
I have been feeling unwell on and off for quite some time, I work at an airport so I put a lot of my recurring tummy bugs down to interacting with too many people. Felt like being back at school...you know the one where your doubled over with pain. Then I got campybylobacter infection last June, again I think interacting with passangers, followed by severe cellulitis on both legs. (Soooo painful) and it just went from there. Thankfully I changed my Doctor as initial one was useless. New Doc is worth her weight in Gold! How about you?

Hi Steph, I know what you mean about being doubled over with pain! It sounds like you had a hard time getting to your diagnosis, especially coming down with infections that may not have seemed related. I am glad you have found a good Doctor now, a good one is worth their weight in gold!

My symptoms started about 4-5 months prior to diagnosis. I had tummy pains, started off just lasting 5 mins after eating then progressed to lasting several hours. I wasn't too sure what it was, thought maybe a food intolerance. At this point it wasn't actually that severe. Had several courses of antibiotics which worked (Tinidazole, metronidazole) for a time but the pain returned after a few days to a few weeks.

When it came back for the third time I was referred to a GI and he organised scopes straight away as my Mum has Crohn's and he was concerned about this. I thought it would all be normal!

The rest of my short but tumultuous journey is in another thread, don't know how to attach that but it was entitled "postop recovery, new diagnosis".

 

[dave13]

My wife has been very supportive,I'm sorry you don't have similar support.You will find support here and please take advantage of it!!! I was diagnosed 3 weeks ago with Crohn's and in this brief time my emotions and energy have been hitting extreme lows.The support of my wife and folks here have helped me greatly.It has been hard at times,and will be hard in the future days to come.You do have support from us here.I would like to use language unsuitable for this site to say how I really feel about Crohn's but...my surgery is healing and I am still in remission and Crohn's can go to H-E-double hockey sticks!!! Childish perhaps but I feel better,see,you have helped me vent and feel better! Dave

 

[steph_irish]

Hi Steph, I know what you mean about being doubled over with pain! It sounds like you had a hard time getting to your diagnosis, especially coming down with infections that may not have seemed related. I am glad you have found a good Doctor now, a good one is worth their weight in gold!

My symptoms started about 4-5 months prior to diagnosis. I had tummy pains, started off just lasting 5 mins after eating then progressed to lasting several hours. I wasn't too sure what it was, thought maybe a food intolerance. At this point it wasn't actually that severe. Had several courses of antibiotics which worked (Tinidazole, metronidazole) for a time but the pain returned after a few days to a few weeks.

When it came back for the third time I was referred to a GI and he organised scopes straight away as my Mum has Crohn's and he was concerned about this. I thought it would all be normal!

The rest of my short but tumultuous journey is in another thread, don't know how to attach that but it was entitled "postop recovery, new diagnosis".

Hi I read your thread and really hope you feel better soon,:ghug: sounds like your well acquainted with the CLUB OF PAIN, I also read that genetics plays a huge part also...My friends all consulted DR Google as Axelfl3333 said in post. (I love his witty humour) and all of a sudden they're experts :ybatty: but at least they care :ghug:
Like you I honestly thought I'd be alright, my GI consultant was sure it was post infection IBS from campybylobacter, for luck she asked me last minute if I suffered heartburn to which I replied on and off, genuinely I didn't feel it was enough to cause concern...turns out I've got ulceration in my tummy 2...
My dad had duodenal ulcers, he died from his because he was an alcoholic and couldn't change his lifestyle....My mum annoys me 2 she had most of her upper palette removed because she had a tumor, she was very lucky because they caught it by mistake...her filling fell out...dentist noticed painless ulcer and it went from there...SHE STILL SMOKES OMG it pisses me off sooooo much.

 

[steph_irish]

My wife has been very supportive,I'm sorry you don't have similar support.You will find support here and please take advantage of it!!! I was diagnosed 3 weeks ago with Crohn's and in this brief time my emotions and energy have been hitting extreme lows.The support of my wife and folks here have helped me greatly.It has been hard at times,and will be hard in the future days to come.You do have support from us here.I would like to use language unsuitable for this site to say how I really feel about Crohn's but...my surgery is healing and I am still in remission and Crohn's can go to H-E-double hockey sticks!!! Childish perhaps but I feel better,see,you have helped me vent and feel better! Dave

Hi dave Vent away my dear at least we all understand..:ghug: I've got to say I had never felt so alone after diagnosis just needed one heck of a hug.
It's taken him a few days to understand the gravity of the situation, some guys just can't handle circumstances affecting the equilibrium... I found I've started to explain things to him i.e. getting him to read info leaflets, explained using diagram in info leaflets what areas are affecting me. Just need to take it day by day and yes we both broke down, cried and hugged. You see we've been trying for a baby unsuccessfully for 3 years now, I had one miscarriage. Guess I also needed to understand that my illness also affects him.
I hope you feel better soon, I wish I could give advice to make you feel better but we're all affected differently, reckon that's the hardest to get used to we don't follow any rules :ghug: glad you op went ok. keep in touch steph x

 

[dave13]

Hi Steph,it's great you two are doing better.I went to work this morning for the first time since my surgery, a couple of hours, and was received by supportive co-workers who I feel are genuinely concerned.I tired so quickly:yfaint: I am lucky to work for an understanding boss. I work in a Health Food store,ironic or what? Keep the faith and contact me anytime!

 

[steph_irish]

Hi Dave,
Thank you and I'm so glad your back to work even if it's only a couple of hours. Had to chuckle that you work in a health food store...that'll come in handy
I'm off work until Feb just tryin to get things under some sort of control. still awake at this time looks like another restless night for me please contact me anytime also. I'm a typical Irish lady always full of chat
Talk soon x

 

[PVail]

Thank you for that, THE POWER OF POSITIVE THINKING, I like the idea of yoga, that will be something to look forward to.
I'm just thinking bout the idea of bringing spare underwear to work I work in an airport and am subject to have my bag searched on a random basis,...:ylol: kinky..(not) cheers for the support :ghug:

That made me laugh Steph. Airport or not , I get searched everyday as I work in a harddrive company and just take the spares in once and leave in your locker along with a couple of days of meds ,that way you have peace of mind.
Us Irish aint bothered with security lol:dance:

 

[steph_irish]

That made me laugh Steph. Airport or not , I get searched everyday as I work in a harddrive company and just take the spares in once and leave in your locker along with a couple of days of meds ,that way you have peace of mind.
Us Irish aint bothered with security lol:dance:

LOL that's cos the irish are :yrolleyes:
They don't supply lockers for us so we have to cart our stuff everywhere.. May have to purchase disposable ones. :ylol: You really making me chuckle now ...ah sure if we can't laugh about it we're F...ed

 

[nogutsnoglory]

I'm sorry you haven't gotten the proper medical support or emotional support from your partner. This is a great place to learn what worked or didn't work for others and we are a supportive bunch. Definitely have a look around, ask away and vent if you need to, we are all going through this together.

 

[steph_irish]

thank you he's much better now, guess he needed time to adjust also.
Lovin your name real tongue and cheek
Merry christmas

 

[cynrose]

hi steph!
i hope your partner joins as well...I'm sure it'll help. My husband will be joining this forum too. You mentioned you're a chatty irish lady; well, so am I so we should get along great! lol

I'm sorry for your recent diagnosis right before the holidays. I'm just trying to deal one day at a time (going thru a flare up now). Feel free to chat with me whenever.